On the Outside Looking In: Gluten Free, Family, Holidays and Heartbreak

With the Christmas quickly upon us, I thought today would be the perfect time to answer the following question by one of my wonderful readers…about being on the gluten free diet, dealing with family and fitting in to society (this question was originally posted on my Facebook page).

Do any other GF moms (I have Celiac and so do my 10 yo daughter and 7 yo son) feel heartbroken when you can’t get family to understand what it feels like to see your kids have to eat “alternate” food at everything?

My kids take their special lunch to school EVERY DAY – have never gone through the cafeteria line, they have never eaten pizza/etc… at a birthday party not to mention they have to bring their own treat and can never have the cake, and then holidays just turn out to be a disaster.

I can cook gluten free food very well and I enjoy it… so I’d love to make a holiday meal that EVERYONE can eat – not one where there is segregated food for myself and my kids.

I’d like there to be one meal of the year with others where my kids don’t feel like they are not allowed to enjoy what everyone else is eating. 

But the relatives insist that there can be the regular or “normal” version and a gluten-free version and then everyone will be so happy! I don’t think they notice it comes off this way, but it feels like they are saying – “your GF food is so disgusting that we can’t bear to eat it and that would totally ruin the holiday, so we will just have to have our gluten-filled food also.”

This week has totally made me understand why women with celiac have a high incidence of anxiety.

-N.S.

I’ve been there my friend, and still am, at least in one aspect.  I will cut the small talk and just get down to the heart of the matter on this very difficult, yet very real, subject matter.

I have lost too many hours of sleep trying to re-create foods that my kids’ friends wouldn’t ridicule.  I have taken too many years off my life allowing myself be sick with worry over what effect our dietary restrictions must be having on my family’s ability to function in this world.

I’ve seen the abyss staring back at me, the 3 a.m. sobbing in the darkness of the closet wondering “what the hell am I going to do now?”

And then, without even realizing what I was doing, I embraced the philosophy of Steve Jobs.

My husband wrote a great post some time back about how he felt he was Indiana Jones when it came to the gluten-free lifestyle.  Without any pretension and with all humility, I can tell you that as far as I am concerned, I strive to be the Steve Jobs of gluten-free.

Think Different

When Steve came back to Apple in 1997 the company was a mess, on this point almost everyone can agree.  Apple had been spending too much time and talent trying to compete in the already crowded field of “basic-beige-box-monitor-keyboard-mouse-bad-software-that-nobody-likes” personal computing.

Think about it: Apple was trying to get a share of a huge business model that NOBODY LIKED.  You really can’t inspire greatness when your marketing slogan is “Our computers crash less often.”

While “going along to get along” would have been reasonable for most companies (after all, even mediocre computer companies could generate gobs of free cash flow just by showing up to the game), Steve refused to embrace the concept of “best house in a crappy neighborhood.”

The problem wasn’t the house; the problem was the neighborhood.

So, Steve decided it was time for his little corporate family to move to a better part of town, and if that part of town didn’t exist, then they would just have to build it themselves and see who else might move in there as well.

The first corporate slogan that Apple adopted when Steve returned was “Think Different.”

At first blush, this sentence is grammatically incorrect.  “Different” should be an adverb (differently) that modifies the verb “think.”  That wasn’t the point.  Steve didn’t want to think differently about the same old model, Steve wanted his people to think of a different model, a completely new way of man and machine embracing the world.  In his own words (thanks to Wiki):

“When you grow up you tend to get told the world is the way it is and your life is just to live your life inside the world.  Try not to bash into the walls too much.  Try to have a nice family life, have fun, save a little money.

That’s a very limited life.  Life can be much broader once you discover one simple fact, and that is – everything around you that you call life, was made up by people that were no smarter than you.  And you can change it, you can influence it, you can build your own things that other people can use.

The minute that you understand that you can poke life and actually something will, you know if you push in, something will pop out the other side, that you can change it, you can mold it.  That’s maybe the most important thing.  It’s to shake off this erroneous notion that life is there and you’re just gonna live in it, versus embrace it, change it, improve it, make your mark upon it.

I think that’s very important and however you learn that, once you learn it, you’ll want to change life and make it better, cause it’s kind of messed up, in a lot of ways.  Once you learn that, you’ll never be the same again.”

And that, my friends, is the all embracing passion that was Steve Jobs.

If you accept the world as it has been given to you,

If you will allow the expectations of other people to shrink the world in which you live,

If you choose to let your past define the actions that will determine your future…

Then you will end up with a boring beige box running on somebody else’s flawed operating system, that no one really liked to begin with.

Do Different

After many years of banging my head against the wall and feeling on the outside looking in, I can honestly say that the key to restoring my sanity was only to be found in rejecting the old model of the standard American diet and its social implications.

This was a necessary first step but certainly not the last one.  “Nature abhors a vacuum.”  What a true statement.

If you are spending your time and energy trying to fit in to the old model, or trying to shed yourself of the old model, but not consciously embracing a new way of living, then in my opinion you are destined for any number of bad ideas to rush in and fill the vacuum.

Nothing sharpens this sentiment more than the holidays, the time when we are all supposed to embrace our inner Norman Rockwell, put all family differences aside, and just hope that for a few days the system doesn’t crash.

Insert “blue screen of death” here.

You see, you are fighting against a system that to a certain extent is wired into your DNA.  Certainly your physical DNA, but your social and emotional DNA as well.  This is why our lifestyle is such a struggle sometimes; what is necessary is inherently counter-intuitive.  The gluten-free lifestyle (if we are to function in the “normal” world) demands that we grow gills and breathe underwater; it demands that we sprout wings and fly.

From an anthropological perspective, belonging was essential to survival.  People hunted and cooked in groups in order to protect each other and share the workload in order to better insure their survival.  While most people no longer belong to nomadic tribes, we still have a desire to belong and to protect those in our groups; it’s a Maslow thing.

This time of year brings our individual histories with the holidays into clear focus.  In a sense, our anthropology sabotages our more rational selves, because the collective “tribal survival” instinct kicks in and it is sometimes so powerful that it cannot be overcome.

I struggle with this in a profound way because my memories are still so clear and the emotional joy that such reminiscences create are painful, acute, and very real.

Such is life.

I’ve been a fanatic over the holidays ever since I was a small child.  It was a magical time of the year for me, when my Mom would come alive and decorate our home full tilt (why she didn’t “come alive” the rest of the time is a completely different post).  She would plan special activities and bake cookies for me and my sisters, surprise us with little gifts throughout the month of December – which I always thought was to keep us from asking “How many more days mom???”  But now that I’m a mom, I know it had more to do with her enjoying the expression on our faces greeting us at the door after school with a beautifully decorated little package.

My Dad was always in charge of the holiday feast (including the “roast beast”) and I was his pint sized sous chef.  Those memories of being in the kitchen with my Dad are some of my most precious, not just because they were fun times…but because I may never experience them with him again.

No, my Dad is not dying, he’s very much alive and well.  So what’s the problem you ask?

I can no longer cook a holiday feast with my Dad because the gluten-filled foods my parents prepare for the holidays are poisonous to me and my family.

Carrots are Carrots, Right?

Not that my Dad would not enjoy preparing delicious gluten free gravy with me, the problem is that my mom wouldn’t eat it.

Nor would she eat a “gluten free” carrot, because, ya know, gluten free carrots taste funny.  (To clarify: my Mom has recently started to come around a bit, I’m speaking about my early struggles here).

As it turns out, carrots are not always “carrots”!

And I’ll clue you in to a little truth at this point: what you thought you knew is not always what you think you know.  That is the disconnect with which many of us struggle; our memories and deep emotional bonds with our families and friends can be so easily strained and even severed over our dietary need to “Think Different.”

Most people don’t want to think different.  They want to live their lives in a manner so that they arrive safely at death.

I summon every ounce of courage I have when I say this: I will not live my life in a manner so that I may simply arrive safely at death.  I didn’t invent this phrase and I’m not sure who did.  But it is my motto and should most certainly be yours as well.

Epic Struggle

The struggles I experienced with my family were at times epic.  I honestly can’t remember how many half-truths and rationalizations I allowed myself to believe so that I could simply feel like I belonged once again.  If I honestly knew how much time, money, and energy I devoted to the effort of “fitting in at all costs,” I would probably cry.  But I can’t change that, I can only share my experience with all of you and try try try to help you move beyond the old ordinary as quickly as possible.

There is so much content on my blog devoted to transforming our favorite gluten-filled memories to gluten-free reality.  I view it as a challenge and have always done my best to be as honest and candid as possible.

But at the end of the day, it will never be the same.  It will never be easy for any of us as long as we continue to cling to the idea that we can “bend a little as long as we don’t break.”  I now believe that for “us,” the select few who have been forced to fundamentally re-think their relationship with food (and by extension, our fondest memories), we can no longer afford to try and “think differently.”  That won’t work.

We cannot hope to build a more elegant “plain beige box.”  This proposition is as impossible for us as it was for Steve Jobs when he returned to Apple.

So what is one to do?

I challenge you to channel your inner Steve, to come up with something like this:

Hello, World!  I’m not beige anymore!  I’m indigo.  Or lime, strawberry, tangerine, grape, etc., etc.

This computer had a handle built into the top of the unit.  Completely useless but fun in its suggestion.  Apple guru Jonathan Ive apparently had to overcome every objection of the Apple suits to get his “handle” built into the machine.  Perhaps this was a foreshadowing of the explosion of mobile Apple devices to follow.  This is entirely the POINT!  You never know when a seemingly innocuous and useless add-on can become the fundamental pillar upon which greatness is built.

To say that Apple “just makes computers” is to say that our food is simply “gluten-free.”  The only way we can aspire to greatness is if we are willing to “think different.”  It’s not just that our diet and lifestyle are necessary for our health and the health of our family.  Our lifestyle is fundamentally BETTER than most others, and any objective look at waist-lines and cholesterol counts will confirm this.

You are DIFFERENT, you are not thinking differently, you are “thinking different.”  In the final analysis, when your extended family and the world looks at you and asks, “why are you doing this?”…your immediate response, not from training or spite or tragic defense, but from a position of supreme Steve confidence, should be…

“Why aren’t you?”

I will be shutting down for a week or so to celebrate the holidays with my little gluten free family.  I wish you all a VERY Merry Christmas and a Happy New Year!

In closing the old year, I leave you with my husband’s favorite “political” quote from Teddy Roosevelt:

“It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better.  The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat.”